About the treatment
The first response to diaphragm paralysis in neuralgic amyotrophy (NA) is often to 'treat' yourself, for example by raising the head of your bed or sleeping in a sitting position. However, this does not solve the problem for everyone, and does not alleviate the symptoms during the day. If you have obvious problems with lying down and sleeping, we strongly advise you to be referred to a center specializing in home ventilation (Centrum voor Thuisbeademing – CTB).
Following an interview and examination, the specialized center can provide you with good advice about the improvement that can be expected with a non-invasive nighttime respirator. This advice is intended not only to enable you to sleep better at night and without interruption, but also to give your diaphragm a 'rest'. This will improve your endurance during the day. Not everyone can use a respirator, but if you can, this often results in a strong improvement in the quality of your sleep and your functioning during the day.
The treatment What can you expect?
If the treatment does not lead to sufficient recovery within 3 to 4 years, we can consider treating diaphragm paralysis by means of surgical plication. A paralyzed diaphragm is similar to a spinnaker, the parachute-like sail at the front of a sailboat. If the diaphragm balloons out due to weakness, the diaphragm muscle can contract even less effectively. By literally surgically reefing the central tendon (folding it double and fastening it), the relationship between the muscle and tendon improves and the diaphragm can work more effectively. This may enable some patients to sleep without always using the respirator. Plication requires surgery and is preferably done at the initiative of, or in consultation with, your doctor at the CTB.
An experimental treatment involves a pacemaker for the diaphragm, which stimulates the muscle electrically following surgical placement of an electrode. However, this treatment is not yet available in the Netherlands. One of the problems with current pacemakers for stimulating the diaphragm is that the stimulator on one half of the diaphragm does not sense what is happening on the other half. Because the rate at which you breathe varies, the stimulation can result in the healthy half of the diaphragm exhaling, while the paralyzed half with the pacemaker is inhaling. As a result, the pacemaker is not yet an option for unilateral diaphragm paralysis, which occurs most frequently in NA.
What can you do yourself?
If you have diaphragm paralysis, you can take some practical steps yourself. For example, you can wear an SOS badge or a USB stick with information about your paralysis. In case of an accident, this enables ambulance personnel to see why you breathe poorly when lying down.
Regarding swimming underwater, it is strongly advisable to try this out with solid ground under your feet. If you observe that you are unable to continue breathing when the water is at chin level, make sure you never go swimming - or at least not unsupervised - at locations where you cannot get out of the water quickly by yourself.
Prognosis of the paralysisAt Radboudumc, in collaboration with the CTBs in the Netherlands, approximately 100 patients have now been diagnosed with diaphragm paralysis caused by NA. Approximately one-third of these patients recover within a few months, sometimes even before the diagnosis has been made. lees meer
Prognosis of the paralysis
At Radboudumc, in collaboration with the CTBs in the Netherlands, approximately 100 patients have now been diagnosed with diaphragm paralysis caused by NA. Approximately one-third of these patients recover within a few months, sometimes even before the diagnosis has been made. Another one-third of the patients recover very slowly over 3 to 4 years, and the final one-third do not recover at all. You will know your prognosis only as time passes. The examinations described above can help track your recovery (or lack of recovery). This can be useful information for determining the best type of treatment